24 November 2007

Band of Parents...A Cookie Cutter Approach on How To Save A Life...

Last weekend when I was in Manhattan, after having a great lunch with my daughter at the "Moonstruck Cafe", near where she works on the Upper East Side, I found myself with a couple of hours waiting for her to get off work before heading over to her apartment. I decided to walk over and check out a place I've been aware of for years, and I know several people who know it much more intimately because their children have been treated there as they've battled neuroblastoma. Of course, I'm speaking of Memorial Sloan Kettering Cancer Center.

I walked through the doors, checked in with the guard and took the escalator up to the lobby. I saw the waiting area, where people sit until they're name is called to be admitted. You could see the fear etched on so many faces. It was impossible not to feel it. I remember being struck by two simultaneous thoughts: "This is a place where no one in their worst imaginings would ever want to find themselves" and, at the very same time, "Thank God this institution exists!". It was such an odd, comingling of impressions.

3F8 Antibody Treatment
Targeted High-Tech Therapy Meets "Grass Roots", Parentally-Steered Fund-Raising

MSKCC is a huge place and a great deal of cutting-edge research takes place there. So many families with kids of all ages have battled a particularly ferocious and insidious variety of cancer with treatments that are horrendously painful, difficult and not always successful. However, in the world of Neuroblastoma, Sloan-Kettering is known as a beacon of hope. They are currently on the cusp of a new phase of monoclonal antibody treatment and many kids of all ages, and the famlies who love them, are looking at it as a talisman of hope. It's a new antibody treatment and the only place it will be available is at Memorial Sloan-Kettering Cancer Center.

I know money is tight for many of us this year, but most of us aren't facing a possible last Christmas with the kids we love with every fiber of our being. There are some Moms and Dads, sisters and brothers however, who are facing this prospect and I can't imagine how they function, but they do and with a grace, style and steely determination that blows my mind and elicits my highest admiration and deepest respect.

You can meet some of these young adults and kids by clicking here: Heroes and, if you want to see a beautiful angel, check out Nathan's site. Nathan was also treated at MSKCC and, unfortunately, the hoped for biomedical breath-throughs will be too late for him and his sweet family, but Nathan and the kids who will be celebrating the holidays in heaven this season most certainly won't be forgotten. Through their endurance and desire to forward medical science they, too, have paved the way for research with inestimable and very personal contributions and sacrifice. You may read other online journals about kids like Erik, Nick, Sidney, Emily, Anna, Dylan and Toby, just to name a few, who's lives may still be changed by the money you spend to buy a dozen cookies.

These parents have banded together and, in fact, call themselves "Band of Parents" because they are raising money in order to enable head researcher, Dr. Cheung, and the Neuroblastoma Team at MSKCC, to move forward with this antibody trial that may mean that these families get to spend another holiday season with their children who suffer from this most nasty and evil cancer.

There is an online flyer that the "BoP's" have created explaining in more detail about who they are, the science behind the new antibody treatment, and what they need from the rest of us. I think it's the very epitome of a "grass roots" campaign and rather than allowing themselves to feel defeated and at the end of their road and ropes, they have literally forged ahead to raise the money necessary for this new trial to begin and possibly save the lives of their kids. Who among us wouldn't be right in there doing the same if we had kids fighting neuroblastoma? You bet we would. It's what parents do.

All they are asking from the rest of us is to buy cookies. It's a pretty simple request and it doesn't require very much of us. Not only are they in the midst of battling it out with this disease on the front lines by tending to and supporting their desperately ill children, but they also have to use that most precious resource of all, their time, to fund-raise for a possible therapy which may literally mean the difference between life and death.

If you get the chance, please check out their site and, if you can spare $30, know that every cent you pay for the cookies will go toward research in trying to eradicate Neuroblastoma. As I've mentioned, I've spoke with a few of these parents and I know this is not only a legitimate fund-raising effort, and I also know that if I had a child sitting in one of those seats in the waiting room at Memorial Sloan-Kettering Cancer Center, I would appreciate it from the bottom of my heart if others could help me save my child and I'd knock down anything or anyone who stood in the way. I'm betting you would as well.

I was lucky last Friday evening as I waited for my daughter to get off work. We walked around town, ordered a hot drink at Starbucks and we hung out at her apartment that evening with no more pressing plans than deciding which movie we would see the next day and where we might choose to have dinner. Pretty carefree stuff. It's incumbant for those of us with healthy kids to remember that many families aren't afforded the luxuries the rest of us take for granted. Their days are filled with what amounts to, literally, life and death decisions when considering treatment options.

I hope you'll do a little investigating yourself and read their pamphlet and find it in your own heart to say a special prayer of thanksgiving for the children in your life who are healthy and living their lives, even if they make you want to pull your hair out form time to time, and send a few bucks to families with children who aren't afforded the ease with which the rest of us go about our day-to-day lives.

It's worth noting that any of us could, at any time, find ourselves members in a group like "Band of Parents". I'm sure there was a time when these families never thought something like Neuroblastoma could possibly touch their lives. Unfortunately one day they discovered that it could and they were thrust into a situation that is the epitome of a nightmare for the uninitiated among us.

I believe in my heart this new research at MSKCC merits our attention and whatever we can afford to give. And also, when considering what to give this person or that, this holiday season, realize that most of the time it's forgotten before January is torn off the calendar. Not only would you be buying those on your gift list a yummy present, but you'd also be an active participant in possibly funding a new therapy to eradicate this disease and nailing down Neuroblastoma. It's a present that "gives" twice. One size fits all, no worries that it won't "fit" and tax deductible! Does it get any easier than this? You place an order and it's DONE. So place several and really be DONE!

When I walked out of Sloan-Kettering last Friday evening into the brightly-lit evening with cabs honking their horns and clutches of passersby making their way toward the subway, it wasn't lost on me that many people walk through those doors with heavy hearts - stepping out for a bite to eat with loved ones still in treatment or, worse still, returning to the outside world without a precious family member who will never, ever step outside of 1275 York Avenue again. Once again, I reiterate, any one of us could easily find ourselves in a similar position someday.

I really hope you'll check it out and order some cookies. I know some of these families and it's worth your money and five minutes of your time.